Stephany,

Please talk your mom into getting a PEG tube. IMHO, it is necessary NOW. Like Gary said, unless she was seriously overweight before, 100 lbs. is way too much to lose. She needs to get proper nutrition so she has the strength to fight this disease.

Has she tried "magic mouthwash" yet? It is a concoction mixed by a pharmacist and several OCF members have had good results with it. Also, maybe she should take her pain meds BEFORE she eats. If the magic mouthwash is used before eating, it has a numbing effect and eating isn't as painful. The PEG is still her best bet, though.

Heather never had ulcerated lips, but she did have open fistulas, one under her chin and one on the side of her neck. Unfortunately, there was not much we could do about them. At first, when the doctors thought they were the result of an infection, they packed them with sterile strips. We had to go to the doctor's at least twice weekly to have the packing changed. When the fistulas got bigger, they stopped packing them and we just tried to keep them clean. When the docs realized she had a recurrence, they said nothing could be done about the fistulas until the tumors were under control. Unfortunately, that didn't happen for Heather. If the doctors can manage to shrink your mom's tumor(s), the fistulas can be surgically corrected. I'm sorry, but I don't know of anything that can be done until then.

Rosie